Published by The Milbank Quarterly 2000 Fall; 78(3):347-374
As the Baby Boom generation nears retirement and old age, concerns about how the
United States will meet the long-term-care needs of its growing elderly
population are intensifying. The Social Security Administration projects that
one in five Americans will be aged 65 or older by the year 2030, compared with
about 13 percent now. Most of the increase will occur between 2010 and 2030 as
the Baby Boom generation turns 65. Whereas the family has long been the
primary source of long-term care for the elderly, the steep increase in the
elderly population casts doubts on whether it can continue in this role as the
number and proportion of older adults increases. In particular, there is
concern that demographic trends affecting the number of potential family
caregivers and the competing demands for their time threaten their willingness
and ability to continue assume most of the responsibility for long-term care.
Trends toward delayed childbearing and increased female labor-force
participation, for example, suggest a growing "sandwich generation,"
especially of women, who are caught between the demands of child rearing and
elder care while attempting to play a more demanding role in the work force.
Reduced availability of family caregivers clearly could affect the economic
and physical well-being of the elderly and their families. Public budgets will
also come under pressure if public programs are called upon to replace what
previously has been informal, or unpaid, family care.
Recent evidence suggesting a downward trend in the age-adjusted prevalence
of disability and functional limitation among the elderly has raised hopes
that long-term-care burdens on families and public pro-grams will be less than
feared. However, even with a lower disability prevalence, growth in the size
of the elderly population could result in a constant or larger absolute number
of elderly persons needing assistance, depending on the relative rates of
change. Any increase in the level of disability among the disabled also could
imply greater burdens on affected families and public programs. Thus, there is
a pressing need for information on how disability is changing and how families
are responding to those changes.
We rely on the 1984 and 1994 National Long Term Care Surveys (NLTCS) to
update the estimates of potential and active family caregivers presented by
Stone and Kemper (1989) and to examine changes over the decade in informal
family caregiving. We use consistent methodology to measure the prevalence of
chronic disability among the elderly in each year and the distribution of the
disabled elderly by receipt of informal and formal care and by the presence of
spouses or children who might provide care. Finally, we examine the
characteristics of both potential family caregivers and those who actually
provide care and discuss the implications of observed changes.
Background
Concerns that an aging population and demographic changes affecting the
availability of informal caregivers will overwhelm families' willingness and
ability to be the primary providers of long-term care are not new. Nor is the
accompanying concern about how public programs and informal caregiving
interact. In the mid-1980s, for example, concerns arose that the then-new
Medicare prospective payment for hospital care and the resulting release of
elderly patients "sicker and quicker" would add to the pressure on families
already bearing the primary responsibility for long-term care. Simultaneously,
there were hopes that publicly financed home- and community-based services
could support families' efforts and save public dollars by delaying or
avoiding expensive institutional care. Finally, there were fears that publicly
financed formal care would substitute for informal care and place
unsupportable pressure on constrained public budgets (Stone 1987; Kemper,
Applebaum, and Harrigan 1987).
All of these issues remain in one form or another. The Health Care
Financing Administration currently is extending prospective payment to all
Medicare post-acute care options. This change is prompted, in part, by the
rapid increases in Medicare home health care spending that occurred in the
early 1990s and by the fear that post-acute home health care was becoming de
facto a long-term-care benefit. At the same time, states are struggling to
contain Medicaid long-term-care costs, largely by expanding alternatives to
institutional care, such as personal-care homes and home- and community-based
service programs. Overlaid on this policy background are demographic and
disability trends that will affect how the scenario plays out over time.
The two most compelling population trends affecting the need for long-term
care and the supply of potential family caregivers are increases in life
expectancy at age 65 and declines in fertility among the Baby Boom generation.
The Social Security Administration projects the remaining life expectancy for
the first wave of Baby Boom men and women turning 65 in 2010 to rise to 16.8
and 20.1 years, respectively, and to increase consistently thereafter. The
fertility rate for Baby Boom cohorts, on the other hand, was generally less
than 2 children, compared with rates of between 2.4 and 3.6 children for their
parents' cohorts. Beginning with the Baby Boom cohorts and continuing
thereafter, there also has been a trend toward delayed fertility and increased
female attachment to the labor force. This implies that there will be fewer
adult children to care for the Baby Boomer cohorts when they begin to require
long-term care in 2020 and beyond, and that those children will be more likely
to have simultaneous responsibilities for minor children. With upward trends
in female labor-force participation, employment is more likely to represent a
competing demand for the time of family caregivers. Some recent evidence
suggests care recipients receive fewer hours of informal care and more hours
of formal, or paid, care when female primary caregivers are employed (Doty,
Jackson, and Crown 1998).
All else being equal, declines in the prevalence of disability could offset
some of the potential gap between the number of elderly persons requiring
long-term care and the supply of family caregivers to provide it. Recent
research supports a downward trend. In 1993 the Committee on National
Statistics of the National Research Council found evidence in existing
literature of declines in both incidence and prevalence of lower levels of
disability, namely, limitations in instrumental activities of daily living
(IADLs), but the underlying causes were unclear (Freedman and Soldo 1994).
More recent studies have found unequivocal declines in prevalence of
age-adjusted IADL and ADL disability (Manton, Corder, and Stallard 1997) or
functional limitations (Freedman and Martin 1998), while others raise doubts
whether a persistent downward trend has been demonstrated (Crimmins, Saito,
and Reynolds 1997; Reynolds, Crimmins, and Saito 1998).
The net impact of these trends on family caregiving depends on the relative
magnitudes of changes in the prevalence of disability, the number of elderly
persons, the number of potential family caregivers, and competing demands for
potential caregivers' time. We document how these factors changed between the
mid-1980s and the mid-1990s.
Data and Methods
Data for this analysis are drawn from the 1984 and 1994 waves of the NLTCS.
The NLTCS is a nationally representative survey of persons aged 65 or older,
and it is designed to identify those who are chronically disabled in one or
more ADLs or IADLs. The samples are drawn from Medicare enrollment files and
represent both community and institutional residents. The survey is refreshed
each wave with a new sample of persons who have turned 65 since the previous
survey, and in 1994 a supplemental sample of those aged 95 or older was added
to increase the precision of estimates for the very old. Because the survey
collects detailed information on demographic and health-related
characteristics as well as on receipt of disability help and those who provide
it, data from the two waves offer a unique opportunity to examine changes in
chronic disability, service use, and the caregiving experience over the course
of a decade.
Sample
Because our focus is caregiving, our sample is limited to those who
received hands-on or standby human assistance with one or more ADLs or IADLs
because of health or disability for at least three months, and those who were
in institutions. For simplicity, we refer to this sample of persons using
human assistance for help with chronic limitations as the "chronically
disabled," although, of course, other definitions are possible. Persons who
reported using special equipment to perform these activities but did not use
human help are excluded from our analysis. The ADLs considered in this study
are bathing, dressing, toileting, transferring, getting around inside, and
eating. The IADLs are meal preparation, grocery shopping, laundry, light
housework, financial management, taking medication, telephoning, and outside
mobility. The small number of elderly persons who reported only the inability
to perform at least one IADL but had no human help (about 0.5 percent of those
with a limitation) also were excluded from this analysis. Our final unweighted
sample for 1994 consists of 3,643 chronically disabled persons: 2,313 residing
in the community and 1,330 residing in institutions. In 1984, the unweighted
sample is 5,798 chronically disabled elderly: 4,108 in the community and 1,690
in institutions.
For each sampled person, the survey collected rosters of all household
members, regardless of relationship, and all children living outside the
household, as well as information on all additional persons actually providing
disability help. Our caregiver-level analysis file was constructed by creating
a caregiver record for every household member, nonresident child, and
additional person reported to be providing help. This resulted in final
caregiver-level files with 9,030 unweighted observations in 1994 and 14,533 in
1984. We determined whether each person on the file provided disability
assistance, and if so, whether the person was a paid, or formal, helper; an
unpaid, or informal, unrelated helper; or a relative. Relatives were not asked
whether they were paid, so all are by default considered unpaid, informal
caregivers in this study. We used this full file of household members,
nonresident children, and helpers to identify whether each elderly sampled
person was receiving informal care only, formal care only, or both.
Checks were performed to verify and reconcile data across the rosters of
household members and nonresident children and also the disability and helper
segments of the survey. Logical editing could be used to correct most
inconsistent or incomplete reporting. The small number of remaining missing
values due to item nonresponse, primarily information on spouses and children
of institutionalized persons, were imputed, based on the weighted, sequential
hot-decking statistical procedure developed by Iannacchione (1982).
From this full caregiver sample, we drew the subsample of spouses and
children of disabled elderly persons that is the focus of our caregiver-level
analysis. The focus on spouses and children, as opposed to all potential
caregivers, which is necessary because of data limitations, is nonetheless
valid from an analytic and policy perspective. Information on other relatives
or nonrelatives is collected only if they were providing care to, or living
with, the disabled elder. However, whereas the universe of potential
caregivers is theoretically, and often in reality, much larger than the
immediate family of spouses and children, these nearest kin have the most
direct social, and sometimes legal, responsibility. Spouses and children are
the majority of active informal caregivers to disabled elders. Three-fifths of
the 7.3 million active informal caregivers in 1984 were spouses or children of
the care recipient (Stone and Kemper 1989). That proportion had increased to
two-thirds by 1994 (Spector, Fleishman, Pezzin, et al. 1998). Spouses and
children also form the group of informal caregivers most likely to be affected
by public policy, such as family leave policies, tax incentives, and caregiver
allowance programs.
Analytic Methods
We examine changes in disability and type of care received among
chronically disabled elderly persons and then profile their potential family
caregivers (spouses and children) with respect to demographic characteristics,
living arrangements, distance from the care recipient, and the level of
disability of the care recipient. Living arrangement was classified according
to five mutually exclusive categories based on relationship and whether the
caregiver lived with the care recipient: resident spouse, applicable only to
community-dwelling, disabled elderly persons; nonresident spouses of
institutionalized elderly persons; resident children living with a
community-dwelling disabled parent; nonresident children with a disabled
parent in the community; and nonresident children with a disabled parent in an
institution. Distance was measured as the time it would take the caregiver to
get to the care recipient.
Although we can identify spouses and children of the full community and
institutional sample, the NLTCS did not collect information on whether any
informal care was provided to institutional residents. Therefore, our
estimates of active caregivers pertain only to chronically disabled persons
living in the community, and any increase in institutional care by definition
results in a decline in the percent of potential caregivers actively providing
care. We also further classified active caregivers as primary or secondary.
A helper's status as primary caregiver was defined as follows: Among those
actively caring for elderly persons with ADL limitations, primary status was
assigned to the caregiver identified by the respondent as helping the most
with ADLs. Among active caregivers of disabled persons with only IADL
limitations, primary status was assigned to the care-giver who helped with the
largest number of IADLs. The small number of ties among caregivers providing
help with the same number of IADLs was resolved by assigning primary status
hierarchically according to the number of days per week; the tasks assumed to
require more frequent help, such as medication management and meal
preparation; and the caregiver's relationship in the order of spouse,
daughter, or son of the disabled person.
The chronically disabled were categorized into three disability levels:
those who received help with only IADL limitations, those who received help
with one to two ADLs, and those receiving help with three to six ADLs. IADL
disability was not ascertained for institutional residents. We classified
institutional residents who were not reported to be receiving human help with
ADLs as receiving help with IADLs only.
Estimates were weighted based on the 1984 and 1994 cross-sectional sampling
weights to represent the U.S. population aged 65 and older in each year. We
have further adjusted these weights to be consistent with the Census Bureau
definitions of institutional residence. Differences in our 1984 estimates
relative to similar estimates appearing in Stone and Kemper (1989) are the
result of slightly different weighting. We reestimated all 1984 numbers to
ensure consistent methodology across the two years.
Standard errors were calculated based on the generalized variance function
method described in the Bureau of the Census "Source and Accuracy Statement"
for both years. Unless otherwise noted, only differences that are
statistically significant at the 5 percent level are discussed in the text.
Estimates that may be unreliable because of high sampling variability
(relative standard errors greater than 30 percent) are also noted in the
tables.
Results
Prevalence of Chronic Disability
Consistent with findings for a more broadly defined disabled population,
the prevalence of chronic disability requiring human assistance among the
elderly declined from 19.7 percent in 1984 to 16.7 percent in 1994 (table 1).
Although the population over 65 increased from about 28 million to 33.1
million in 1994, the number of chronically disabled persons remained about 5.5
million. The prevalence of institutional use was about 5 percent of the
elderly population in both years. (We also examined a broader definition of
disability, which included reports of those who used ADL equipment but no
human help in 1984 and 1994. Because this group is growing, the decline in
total disability would have been 1.8 percentage points, rather than the
three-point decline we found in disability requiring human assistance.)
The decline in prevalence of chronic disability occurred primarily among
the least disabled. The prevalence of IADL-only limitations dropped from 7.7
percent to 5 percent, while the prevalence of any ADL limitation was about 12
percent in both years. The prevalence of ADL limitation was stable for both
community and institutional residents: In 1994, 7.2 percent of the elderly
were receiving ADL help in the community, which was not statistically
different from 7.4 percent in 1984, and 4.6 percent were receiving ADL help in
institutions in both years.
The decline in prevalence of IADL-only disability, combined with no decline
in prevalence of ADL disability, implies a higher level of disability among
those who receive help. This can be seen in the lower panel of table 1. In
1994, about 30 percent of the chronically disabled elderly received only IADL
help, down from 39 percent in 1984. Conversely, about 43 percent received help
with three to six ADLs in 1994, compared with about 35 percent in 1984. In the
community, IADL assistance fell 10.8 percentage points, and help with one to
two ADLs and three to six ADLs each rose just over 5 percentage points. In the
institution, the percent receiving help with one to two ADLs declined, and the
percent receiving help with three to six ADLs increased from about two-thirds
to nearly three-quarters, perhaps reflecing a trend toward community care for
all but the most severely disabled.
Prevalence of Informal Care
Coincident with the shift upward in the level of disability among
chronically disabled persons, there was a decline in the percent receiving any
informal care and an increase in the proportion using any formal or
institutional care (table 2). Disabled persons are classified in the upper
panel of table 2 according to whether they received each type of care. In the
lower panel, they are classified into mutually exclusive categories according
to type of care and from whom it was received. The percent receiving any
informal care declined from 70.5 percent in 1984 to 65.8 percent in 1994,
while the percent receiving any formal or institutional care rose from 48.7
percent in 1984 to 59.9 percent in 1994 as a result of increases in formal
care in the community and in institutional care. In the lower panel, it can be
seen that more than half the 11-point increase in formal care reflects greater
use of both formal and informal care in the community. That is, a larger
proportion who received any informal care--including informal care from
spouses or children--were also using some formal care in 1994. More than half
the chronically disabled elderly relied solely on informal care in 1984, and
about 19 percent used both formal and informal care. In 1994 sole reliance on
informal care had dropped to about 40 percent, while the use of both types of
care rose to just over a quarter. The rest of the increase in formal care is
accounted for by a nearly one-point increase in the percentage of persons
receiving only formal care in the community and a four-point increase in the
percentage in institutions, from 25.6 percent in 1984 to 29.6 percent in 1994.
This pattern of declining informal care and rising formal care also
pertains to the subset of the chronically disabled with spouses or children
who could act as family caregivers. The proportion who had potential family
caregivers rose slightly to 82 percent of the disabled elderly in 1994, up
from 80 percent in 1984, and the percent who had children rose from 75 percent
to 78 percent (not shown). As would be expected, among those with potential
family caregivers, the proportion receiving informal care is higher, and the
proportions receiving only formal or institutional care are lower than among
all disabled elderly persons in both years. Nevertheless, this group had a
larger decline in the percent receiving any informal care and a larger
increase in the percent receiving both informal and formal care. The percent
of those with spouses or children receiving any informal care fell from 78.7
percent in 1984 to 71.9 percent in 1994, while the percent receiving both
informal and formal care rose from 19.4 percent to 27.1 percent. Receipt of
any care from a spouse or child also decreased to 64.2 percent among those who
had a spouse or child in 1994, down from 70.7 percent in 1984. The use of
institutional care among the group with spouses or children rose by five
points, from 19.8 percent to 24.8 percent in 1994.
We examined the possibility that this trend toward less informal and more
formal care was due to changes among the new cohorts turning 65 in the decade
between the surveys. To do this, we compared persons aged 65 to 74 in 1984
with those in the same age bracket in 1994, all of whom turned 65 after the
1984 survey, and those aged 75 or older in each year (table 3). We found that
the pattern of declining informal care and rising formal care holds for both
age groups. In both 1984 and 1994, those under age 75 were far more likely to
receive any informal care and to receive care from spouses or children and
less likely to receive formal care than the older group. This is consistent
with the idea that, as age and disability increase, it becomes more difficult
to rely on only informal sources of care (Stoller and Cutler 1993). Among
those who had spouses or children, the percent of those under age 75 who
received any informal care and any care specifically from spouses or children
each fell by about six points. For those 75 or older who had spouses or
children, the declines were 4.5 and 5.5 points, respectively.
An important qualifier to the decline in informal care is that it depends
in part on the increase in institutional care, which may reflect the greater
level of disability among the chronically disabled in 1994 as well as any
decline in family commitment to caregiving. However, even among community
residents, family caregiving has declined. Among those under age 75 who had
spouses or children, 95.4 percent were receiving any informal care in 1994,
2.4 percentage points less than in 1984, and 86.2 percent were receiving
informal care from spouses or children, down from 89.5 percent in 1984. Among
those aged 75 or older with spouses or children, there was no decline in the
percent receiving any informal care (about 96 percent in both years), but the
percent receiving care from spouses or children dropped from 87.4 percent in
1984 to 85 percent in 1994.
Trends in the Demographic Profile of Potential and Active
Caregivers
These trends toward less informal and more formal care among those who have
spouses and children can also be seen in the numbers and characteristics of
their potential and active family caregivers (table 4). The number of spouses
and children at risk for informal caregiving increased slightly over
the ten-year period, from 13.9 million to 14.6 million, maintaining a ratio of
3.1 potential family caregivers per disabled elderly person. The number of
spouses and children actively providing care,
however, declined 13 percent, from 4.3 million in 1984 to 3.8 million in 1994.
This decline reflects, in part, the decline from 3.5 million to 3.4 million in
community residence among the chronically disabled with spouses and children.
Nonetheless, the ratio of active family caregivers per community-dwelling
disabled person with a spouse or child also fell, from 1.23 in 1984 to 1.11 in
1994, consistent with a reduction in family caregiving even among
community-dwelling disabled elderly persons. None of this reduction, however,
occurred among primary caregivers, whose numbers remained constant at 2.6
million, despite the decline in the number of community-care recipients.
Combined with the results in table 2, this indicates that although a smaller
proportion of community residents with a spouse or child were receiving any
care from them in 1994, a larger proportion were receiving their primary care
from these family caregivers (78.3 percent in 1994, up from 74.7 per-cent in
1984). The reduction in total active caregivers was entirely due to a decline
from 1.7 to 1.1 million persons in the number of family caregivers serving a
secondary role. Given the increase in formal care, it seems plausible that
paid helpers are filling this secondary role for more recipients.
To put the magnitude of family caregiving in a national perspective,
spouses and children with potential family caregiving responsibilities made up
slightly over 7 percent of all persons aged 15 or older in the United States
in 1994, similar to the 1984 percentage. Spouses and children actively
providing ADL or IADL care to disabled elderly persons were less than 2
percent of the U.S. population aged 15 or older in 1994, down a half
percentage point from the 1984 level of 2.3 percent.
With the exception of a marked increase in the proportion of married
persons, there were no striking changes in the demographic profile of
potential caregivers. The vast majority are adult children (12.0 million and
12.8 million in 1984 and 1994, respectively), with roughly equal numbers of
daughters and sons in both survey years. The age distribution was largely
unchanged, although there was a shift toward older ages, with a slight
increase in the proportion of middle-aged (45 to 54 years old) spouses or
children and in the proportion of potential caregivers aged 65 or older.
Among active primary caregivers, spouses and children aged 65 to 74
continued to be the largest group of primary active caregivers (32.3 percent
in 1984 and 27.3 percent in 1994), but there was a significant increase in the
proportion of primary caregivers who were themselves quite old. Nearly
one-quarter of all active primary caregivers in 1994-- 636,000 persons--were
aged 75 and older, up from 18 percent in 1984. There was also a significant
increase in the proportion of middle-aged active caregivers, with slightly
above 18 percent of primary caregivers and more than one in three secondary
caregivers between ages 45 and 54, an age group that also is more likely to
have competing demands from market work and child-rearing.
Overall, children far outnumbered spouses as active caregivers, reflecting
both the high rates of widowhood among the elderly population and the fact
that multiple siblings sometimes share the responsibility of caring for a
disabled parent. Contrary to past trends, however, about as many children as
spouses were primary active caregivers in 1994. This was due largely to
a significant decrease (from 33.9 percent in 1984 to 28.6 percent in 1994) in
the proportion of primary caregivers who were wives and a corresponding
increase in the proportion who were sons. Spouses, nonetheless, continued to
bear a large share of primary caregiving, representing only 12 percent of
potential caregivers, but 49.5 percent of all primary active caregivers in
1994.
Despite the decrease in active caregiving by wives, they continue to be
more likely to provide care than husbands, and daughters remain more likely to
provide care than sons. Among children who are primary active caregivers,
daughters still outnumber sons by more than two to one. Participation of sons
as primary caregivers increased by 50 percent between 1984 and 1994, but they
still accounted for only 15 percent of primary caregivers in 1994.
Finally, there was an increase, from 12.7 percent in 1984 to 18.1 per-cent
in 1994, in the potential caregivers who were children with institutionalized
parents. Among active caregivers, the proportion of active primary caregiver
children who did not live with their disabled elderly parent increased five
percentage points in 1994 Although there were some significant differences in
the distance of caregivers from the care recipient, the differences were
small. Just over two-thirds of potential caregivers lived within an hour of
the care recipient in both years. Not surprisingly, active caregivers were far
more likely to be nearby. In 1994, 97 percent of primary caregivers and 93
percent of secondary caregivers were within an hour of the care recipient.
Interestingly, there was a small decline (3.3 points) in the percent of
primary caregivers living with or within 10 minutes of the care recipient, and
a slightly larger increase (5.6 points) in the percent of resident secondary
caregivers.
Trends in Caregiving by Disability Levels
Consistent with the relative decline in the prevalence of IADL-only
disability among elderly persons receiving human help, both potential and
active family caregivers were faced with higher disability levels among care
recipients in 1994. Nearly 5.7 million persons--40 percent of all spouses and
children of disabled elderly persons--had an elderly spouse or parent who
needed help with three or more ADLs. This is a 23 percent increase in the
number of potential caregivers with severely disabled elderly spouses or
parents and a similar decrease in the percent of potential caregivers for
those with only IADL disability (not shown). As shown in table 5, this pattern
holds for wives, husbands, daughters, and sons with a disabled spouse or
parent, and generally for active caregivers as well. The exception is wives,
who declined in overall numbers and in the number and percent acting as
primary active caregivers. Wives who were primary caregivers were not
significantly more likely to be caring for a moderately or severely disabled spouse in 1994. In contrast, more
than three-quarters of husbands who were primary caregivers were caring for a
spouse with an ADL limitation in 1994, up from less than three in five in
1984. Both daughters and sons also were significantly more likely to be
providing care to parents with moderate or severe disability and significantly
less likely to be providing care to parents with only IADL limitations in 1994
than in 1984. Among children who were primary active caregivers, over three in
five daughters and nearly three in five sons were caring for a parent with ADL
limitations in 1994, compared with half of daughters and 40 percent of sons in
1984.
Secondary caregivers also were caring for spouses or parents with higher
levels of disability in 1994 than in 1984, but the patterns varied
substantially, depending on the caregiver's relationship to the disabled
person (not shown). The shift among secondary caregivers toward caring for
more severely disabled persons was driven primarily by daughters: nearly seven
out of ten daughters who were secondary caregivers in 1994 provided help to an
ADL-disabled parent, an 11 percentage point increase relative to 1984.
Secondary-caregiver sons were less likely to provide care to an ADL-disabled
parent in 1994 but more likely to be caring for more severely disabled parents
(three to six ADLs). Conversely, there was a marked trend toward lighter care
among the small number of spouses who were secondary caregivers in 1994.
The Sandwich Generation and Competing Demands
Table 6 examines patterns of caregiving among those who have both a
disabled parent or spouse and the competing demands of child care or full-time
work. In 1994, nearly 3.5 million persons were in the so-called sandwich
generation, facing the potentially dual responsibility of caring for an
elderly person and a minor child. They were about 24 percent of all potential
caregivers, about 8 percent of primary caregivers, and about 24 percent of
secondary caregivers.
In 1994, approximately 1.7 million women--5.2 percent of all women with
children under the age of 15--in the United States had at least one child
under the age of 15 and a disabled elderly spouse or parent. Of those
potential caregivers, 322,000 were actively providing care to a disabled
elderly spouse or parent, and nearly half were primary caregivers. Women with
dependent children were about 22 percent of all women who were potential
caregivers but only about 9 percent of women who were primary caregivers in
both years.
Roughly 1.8 million men--one-quarter of all men with a disabled elderly
spouse or parent in 1994--were also part of the sandwich generation. Although
men are less likely to bear primary responsibility for child care, they also
continue to be far less likely than women to be active caregivers if they also
have children. Less than 6 percent of men who were primary caregivers had
dependent children in 1994. A much larger group of both men and women faces
the competing demands of potential caregiving responsibility and full-time
work, and workers make up an increasing proportion of primary active
caregivers. The lower panel of table 6 presents the number and proportion of
potential and active caregivers who were full-time workers in 1984 and 1994,
by gender. About eight million persons, 56 percent of all spouses and children
of disabled elderly persons, worked 30 hours or more per week in 1994, the
same proportion as in 1984. These potential caregivers were 8.1 percent of the
U.S. population employed full time in 1994, a slight decrease from 9 percent
in 1984 (not shown). They accounted for 27 percent of primary caregivers in
1994, up from 22 percent in 1984. Although fewer workers were secondary
caregivers in 1994, they represented 58.9 percent of that group, about the
same proportion as in 1984.
Consistent with the steady rise in female labor-force participation over
the ten-year period, there was a 4.4 percentage point increase, from 43.3
percent in 1984 to 47.7 percent in 1994, in the proportion of full-time
workers among wives and daughters who had a disabled elderly spouse or parent.
Full-time workers also composed a larger pro-portion of women who were active
caregivers. In 1994, 27.5 percent of women who were primary caregivers were
also full-time workers, up from 23 percent in 1984, and the percent of
full-time workers among women who were secondary caregivers rose to 56 percent
in 1994, up from just under half in 1984. Interestingly, since the absolute
number of working women who were secondary caregivers fell, their increased
representation suggests that the number of nonworking, female secondary
caregivers must have fallen even more. The estimates also indicate the
increased participation of full-time working men as primary caregivers. The
proportion of primary caregiving men who were full-time workers increased from
20.6 percent in 1984 to 26.7 percent in 1994. Contrary to the results for
women, however, the proportion of workers among male secondary caregivers fell
from 69.2 percent in 1984 to 62.7 percent in 1994.
These results for workers are consistent with the overall trends for
potential caregivers, whereby there is less caregiving because of reduced
secondary roles. For both women and men, and for workers of both genders, the
total percent of potential caregivers actively giving care fell between 1984
and 1994; the largest decreases occurred for secondary caregiving.
Interestingly, however, working potential caregivers of both genders
maintained or increased their participation as primary caregivers. Among
potential caregivers, 13 percent of working women in both years were primary
caregivers, whereas working men increased their participation as primary
caregivers from 3.7 percent in 1984 to 5.7 percent in 1994 (not shown). These
increases in the proportion of workers undertaking primary-care responsibility
may help to explain the increased use of formal care.
Discussion
Our results present a mixed picture of declines in the number of family
caregivers but a potential increase in the intensity of caregiving provided by
spouses and children. Between 1984 and 1994, the percent of the elderly
receiving help with ADLs or IADLs decreased significantly, but, because the
decline was almost exclusively at the lowest level of disability, those
receiving care were more disabled. This increase in disability level was
accompanied by a significant increase in receipt of formal care, whether
measured over all disabled elderly persons or over only those living in the
community. However, it also was accompanied by a decrease in receipt of
informal care, specifically care from spouses and children. In fact, the
prevalence of informal care decreased more among those who had these potential
family caregivers. The decrease in the prevalence of informal care and the
greater prevalence of formal care held for both younger and older cohorts.
There was a similar mixed finding at the caregiver level, with potential
family caregivers less likely to be active caregivers but more likely to be
the primary caregiver if they were providing care. A constant 2.6 million
persons were primary caregivers to disabled spouses or parents in both years;
the decline in caregiving occurred only among secondary caregivers.
Our results suggest a far lower level of caregiving than was reflected in
estimates from a recent survey that found that 23 percent of U.S. households
had at least one member who had provided care to a relative or friend in the
prior 12 months (National Alliance for Caregiving 1997). Aside from being a
household-level estimate, there are several reasons why it is not comparable
to ours. The estimate includes those caring for any relative or friend at any
time during the year, and care recipients could be as young as 50 and
potentially free of chronic disability. Also, sampling at the caregiver level
does not link caregivers to any well-defined population of recipients.
Although differences in method make it difficult to compare our results, if
every potential caregiver in our sample lived in a different household,
our household count would be 14.6 million, only about two-thirds of the 1997
study's estimate of 21 million households with active caregivers.
We found no striking changes in the characteristics of potential
care-givers, although they were more likely to be married and were slightly
older, which may contribute to the increased use of formal care. There also
was a significant increase in the proportion of both primary and secondary
caregiving among those aged 45 to 54, a group likely to have competing demands
from work and child care. Those with minor children who were full-time workers
maintained or increased their participation as primary caregivers, although
they generally showed the same reduced secondary participation as did
caregivers as a whole. This factor also could be contributing to increased use
of formal care as a way to manage competing responsibilities.
The increase in community formal care use reflects in part changes in the
availability of long-term Medicare home health benefits. Changes in access to
the benefit, beginning with removal of the requirement of a prior
hospitalization in 1980, resulted in about a fivefold increase in spending
between 1984 and 1994, from about $2 billion to over $10 billion (Letsch,
Lazenby, Levit, et al. 1992; Welch, Wennberg, and Welch 1996; Braden, Cowan,
Lazenby, et al. 1998). Half the spending increase reflected higher average
visits per recipient, but more than a third reflected an increased proportion
of beneficiaries using the service (Komisar and Feder 1998). The percent of
disabled elderly persons with formal caregivers who reported Medicare as a
payment source rose from 16 percent in 1982 to more than a quarter in 1994
(Liu, Manton, and Aragon 2000). Medicaid programs over the same period have
also greatly increased spending on community long-term care as an alternative
to nursing-home care. Although the rate of increase in Medicare home health
spending has ameliorated, and the benefit will be further affected by the
prospective payment system now under development, spending increases were not
limited to public dollars. Out-of-pocket payments for home health care, which
does not include all the largely unmeasured, less skilled services most likely
to substitute for informal care, also increased rapidly, from about $500
million in 1984 to $6 billion in 1994 (Letsch, Lazenby, Levit, et al. 1992;
Braden, Cowan, Lazenby, et al. 1998).
These trends in formal care spending are consistent with factors we
observed that are likely to promote use of formal providers: higher disability
levels among those receiving human help; increased age of caregivers; and
increased primary caregiving among those who work 30 hours or more a week. The
modest increases in the number of men serving as primary caregivers also may
work in the direction of increased use of formal care, based on evidence that
male caregivers are more likely to incorporate formal care (Stoller and Cutler
1993).
Preferences and rising incomes among the elderly also may intensify both
the increase in formal care and the decrease in secondary caregiving that we
observed. For example, Stoller and Cutler (1993) found that both higher income
and higher disability increased the likelihood of paid care being used for ADL
services. The probability of relying on paid care was similar among those who
had nearby children and those who did not. They concluded that those who can
afford formal care may prefer to hire help rather than depending on children,
especially for high-intensity personal care tasks. This may prove to be even
more true as the Baby Boom generation progresses into old age, bringing with
them a history of incorporating more formal care into their own caregiving
than was the norm for earlier generations and of having fewer children than
current cohorts of elderly.
It is important to note that the decline in informal caregiving shown here
reflects entirely changes in caregiving behavior rather than a decline in the
number of children and spouses available to give care. The percent of the
disabled elderly with potential family caregivers actually rose from 80
percent in 1984 to 82 percent in 1994, and the percent with children rose from
75 percent to 78 percent. The lower fertility of the Baby Boom cohort implies
that, in the next 20 to 30 years, there will also be fewer children per
recipient potentially to provide care and, very likely, a greater proportion
called on to serve as primary caregivers, with or without formal support.
Moreover, with increased longevity, the Baby Boom, which is the sandwich
generation of today, may itself face continued informal caregiving
responsibility for parents and new responsibility for spouses who are aging
into frailty.
Our results raise a number of issues for policy. President Clinton's
proposal for a modest tax credit for severely disabled persons and their
caregivers, combined with federal grants to states for information and respite
services (Komisar and Feder 1999), is a recognition that there is a public
interest in the burden long-term care places on families. The demographic
changes projected for the coming decades are likely to increase this burden.
There is substantial concern about a shrinking labor pool as the Baby Boom
generation moves out of the labor force, leaving behind smaller cohorts of
workers (Kotlikoff 1992; U.S. General Accounting Office 1997). Employers and
policy makers, faced with a decreasing ratio of workers to elderly retirees,
may be called upon to address their own competing demands to promote increased
labor-force participation and potentially later retirement while supporting an
informal caregiving system that provides the majority of long-term care.
Shortages of formal care workers could interfere with labor-force
participation by informal caregivers and also work against efforts to
encourage later retirement by the Baby Boom generation. Employers may need to
build more flexibility into the workplace through such measures as flex time
and flex place, which are already increasing. Employers may also find more
direct self-interest in sponsoring long-term-care benefits for workers and
dependents. The federal government currently is formulating such a program,
which may serve as an impetus and model for private employers (Komisar and
Feder 1999). If the current policy environment, which de-emphasizes large
expansions of public benefits and stresses private-sector solutions,
continues, policy makers may be pressed to consider changes in the tax status
of such benefits to put them on an equal footing with other benefits, such as
acute-oriented health insurance.
An inadequate supply of formal care workers also could drive long-term-care toward a more institutional, or quasi-institutional, form. This trend is
already occurring with the growth of residential care alternatives to nursing
homes, such as assisted-living facilities and personal care homes, where
formal services are part of the living arrangement (Bishop 1999). Some of
these settings are in our institutional sample and others are in the community
sample, but we cannot distinguish well enough between types of institutional
or community residence to examine this issue. It is likely, however, some of
the increase in both community formal care and institutional use reflects this
growth, and much more needs to be discovered about the potential for such
settings.
Reductions in the availability of Medicare home health, intended to prevent
the acute care-oriented program from becoming a de facto long-term-care
program as well, may also have the unintended consequence of removing one
source of support for informal providers. The impact would be most important
for lower-income recipients and caregivers. The demographic changes projected
for the coming decades are likely to increase this burden.
There is substantial concern about a shrinking labor pool as the Baby Boom
generation moves out of the labor force, leaving behind smaller cohorts of
workers (Kotlikoff 1992; U.S. General Accounting Office 1997). Employers and
policy makers, faced with a decreasing ratio of workers to elderly retirees,
may be called upon to address their own competing demands to promote increased
labor-force participation and potentially later retirement while supporting an
informal caregiving system that provides the majority of long-term care.
Shortages of formal care workers could interfere with labor-force
participation by informal caregivers and also work against efforts to
encourage later retirement by the Baby Boom generation. Employers may need to
build more flexibility into the workplace through such measures as flex time
and flex place, which are already increasing. Employers may also find more
direct self-interest in sponsoring long-term-care benefits for workers and
dependents. The federal government currently is formulating such a program,
which may serve as an impetus and model for private employers (Komisar and
Feder 1999). If the current policy environment, which de-emphasizes large
expansions of public benefits and stresses private-sector solutions,
continues, policy makers may be pressed to consider changes in the tax status
of such benefits to put them on an equal footing with other benefits, such as
acute-oriented health insurance.
An inadequate supply of formal care workers also could drive long-term-care toward a more institutional, or quasi-institutional, form. This trend is
already occurring with the growth of residential care alternatives to nursing
homes, such as assisted-living facilities and personal care homes, where
formal services are part of the living arrangement (Bishop 1999). Some of
these settings are in our institutional sample and others are in the community
sample, but we cannot distinguish well enough between types of institutional
or community residence to examine this issue. It is likely, however, some of
the increase in both community formal care and institutional use reflects this
growth, and much more needs to be discovered about the potential for such
settings. Reductions in the availability of Medicare home health, intended to
prevent the acute care-oriented program from becoming a de facto long-term-care program as well, may also have the unintended consequence of removing one
source of support for informal providers. The impact would be most important
for lower-income recipients and caregivers. be useful. Our finding of
increased participation of men, particularly adult sons, in the care of a
disabled spouse or parent, also suggests the value of further exploring the
effect of caregiver gender in the interactions between formal care, informal
care, and labor supply as a natural extension to the present work.
A better understanding of how demographic trends are changing the
caregiving landscape, and how families are responding to these changes, is
essential to formulating policy initiatives that enhance the welfare of
caregivers and care recipients while recognizing the trade-offs with other
policy aims and public budgets. The results presented here provide a useful
context for framing the discussion.
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Acknowledgments: Results from an earlier version of this paper were presented at the Annual Meetings of the American Public Health Association in Indianapolis in November, 1997. The views expressed are those of the authors and should not be attributed to the Urban Institute, its trustees, or its funders, or to the Johns Hopkins University School of Medicine. The authors thank Korbin Liu, Christopher M. Murtaugh, and two anonymous reviewers for their helpful comments; and Karen Pinkston, Beth Jacinto, and Nancy Kieffer of Social and Scientific Systems, Bethesda, Maryland, for programming assistance. Address correspondence to: Brenda C. Spillman, The Urban Institute, 2100 M Street NW, Washington, DC 20037 e-mail: bspillma@ui.urban.org).
© 2000 Milbank Memorial Fund. This file may be redistributed electronically as long as it remains wholly intact, including this notice and copyright. This file must not be redistributed in hard-copy form. The Fund will freely distribute this document in its original published form on request.
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